June 2 is a very special day for me. It’s a random day, and it probably means nothing to anyone but me (and possibly my husband). It’s an anniversary that does not celebrate a milestone or an accomplishment, but June 2, 2003 is a date that I will never forget. On that day, I was given a diagnosis that undoubtedly has changed the course of my life.

Every year on June 2, I am brought back to that day, now eighteen years ago. I relive the details of the day moment by moment. I remember what I ate for breakfast (oatmeal), and I remember what I was wearing (white and blue plaid capri pants, a blue button down shirt, and white and blue sneakers). I remember stopping at Dunkin Donuts for a large iced coffee (black) on the way to school. I remember the panic attacks. All. Day. Long. I remember that I had permission to leave after my last teaching period so that I could get to my appointment on time. I remember that my appointment was at 2:30, and I remember that Bruce took a half a day so that he could go with me.

So we got in the car, not talking to each other at all. On the way to the neurology appointment, we stopped at the radiology office to pick up a copy of the MRI results, just in case the doctor

hadn’t yet received them. They kindly folded the paper and put it inside an envelope. In the elevator up to the doctor’s office, Bruce asked me if I was going to open the envelope. Without hesitation I said no way. I knew I wouldn’t understand what was written there, and why not just have these last moments together before the inevitable?

We sat in the doctor’s office, staring at each other, waiting for for him to deliver the news. We didn’t talk. I was too busy having one panic attack after another to even attempt a conversation. After what seemed like an eternity, we finally heard his footsteps approaching. We heard him pause outside the door, and we heard him pull my chart out of the bin outside the room. Then, to our complete and utter shock, we heard him let out a huge sigh, before knocking once and entering the room.

The doctor walked in, greeted us, and told us that I have Multiple Sclerosis. From that moment on, it was as if I was watching someone else’s life unfold. I only heard bits and pieces because my mind began racing. To be fair, I was not yet educated on MS, but at that moment, it felt like I was given a death sentence. We know now that MS is fatal in only the rarest, most severe of cases, yet there was a part of me that did, indeed, die that day. The road ahead of me required a complicated detour that I was not sure I could even navigate.

We left the doctor’s office in a total daze. Suddenly we were occupying space in a world that was completely different for us, yet for everyone else it was unchanged. In this drastically different world, what did we do? We went to Target. I guess we were searching for some sense of normalcy in this new, unknown world of ours. We sat in the car afterwards and called our families to share the news. It wasn’t exactly the kind of news I looked forward to delivering, but at least I finally had an answer. After months of appointments, X-rays, MRIs, blood work, evoked potentials, and cognitive and neurological tests, I was done. It’s not what I wanted nor what I expected, but it was something. The phone calls I made on June 2, 2003 were some of the most difficult conversations I have ever had in my entire life.

Following my diagnosis, Bruce and I holed up at home, and didn’t speak to many people other than each other. Some friends called to offer support, and others dropped off the face of the earth. All the relationships in my life were tested, and certainly the dynamic within them shifted. I learned a lot about my friends, and mourned the loss of many who did not know how to deal with my diagnosis. Sadly, this happens with every relapse, but 18 years later, my coping mechanism for that kind of loss has been fine-tuned, and I have built a support system that holds up.

These women right here, my MS sisters, have never left my side, and although our initial connection was that we all have MS, we could not be more in-tuned with each other if were sisters by blood.

On this day every year, I take inventory of my life since diagnosis. It has not been an easy journey, but it has been amazingly rewarding in so many ways. Since my diagnosis, I have learned that I am stronger than I ever imagined I could be. Everyone has an inner strength, but not everyone realizes it because you don’t summon that strength until you need it. I have discovered my voice to educate and to raise awareness, and my passion for patient advocacy. These are integral parts of who I am, and without MS I don’t know who I’d be right now. One thing I know for sure is that on my diagnosiversary, I always give thanks to the powers that be for all of the parts of me that MS has made better, and for all the things I am still capable of doing despite the MonSter.

I. Am. Strong.

For 18 years I have acknowledged the importance of my diagnosiversary, and this year is no different. I’m still grateful for the many gifts I’ve been given, and even though my journey has not

The content is produced by CCYAN and their fellow Nathalie Garcia.

When I was first diagnosed with Crohn’s disease, I remember hating myself. For so long, I was so angry at the world. I was angry because I couldn’t run anymore. I was angry because I was in pain. I was angry because I felt like I wasn’t capable of anything. 

The stigma of disability is often composed of beliefs that people with disabilities are too sick to do anything, are not capable, and weak. 

Years later I realized the only reason I hated myself and hated my disability was because society made me believe that having a disability was the worst thing that could have ever happened to me. 

People would frequently tell me things like I should reconsider what I wanted to do with my life because of how my illness would impact me. I have been told that it was surprising I could even do what I have done in my life. I have been told that I would be in pain forever.

I have had doctors not believe in me. I have been blamed for my illness. I have been shamed for my weight, for not eating enough, for not trying hard enough, for being too tired, for eating too much “fast food” and an endless stream of hateful and hurtful words.

Sometimes even members of my own family would shame me and suggest I caused my own illness. I think that hurt the most. 

But they could not have been any more wrong. 

Living with a disability allowed me to see my black and white world in color for the very first time. 

My disability gave me inspiration for my future career. It allowed me to realize what my true passions and dreams were. It allowed me to appreciate the smallest, tiniest things that no non-disabled person would ever be able to notice. It opened up the door for new hobbies. It empowered me to focus on my mental health. More than anything, it gave me a second chance at life. 

I live for myself now.

I started painting which is weird because I used to only be able to draw little doodles on the bottom of my notebooks. 

I do yoga when before I would over-exercise and tire out my body. 

I found out about Trader Joe’s vegan chocolate chip oatmeal cookies with coconut (only after the very serious hunt to find snacks that were IBD friendly for me).

The air tastes better. Songs are not even songs anymore; they are seven different melodies and sounds happening at the same time and I can appreciate every bit of it. Every time I take a step without pain, it makes me feel like I am walking on clouds. The sun feels warmer.

I feel colorful. 

Personally, my disability was the best thing that could have ever happened to me. It is difficult. It is painful. It is exhausting. 

But it does not make me weaker than anybody else, less capable than anybody else, and I do the same things anybody else does, and I do it while I’m sick too. 

We all depend on others at one point or another. Whether it’s a significant other, a best friend, or a medical professional… without the support and care of others, it’s impossible to live a full and happy life. At times maybe we don’t feel like we can depend on certain people, or we don’t want to face the fact that we are dependent on others. But I’m here to tell you that dependence does NOT mean that you lose your independence. And when those people you count on let you down, it’s so frustrating. Especially when it comes to the medical professionals in our lives.

After I was diagnosed with Multiple Sclerosis by a general neurologist, I made the decision to switch to an MS Specialist at a comprehensive care center. That was 17 years ago.

Initially I was overwhelmed by the thorough and personal care I received and I knew I had made the right decision. My first appointment was two hours long, and I had never experienced anything like that. The running joke has always been that he put me in a gown to examine me, which I was not expecting. My mother had gone to this appointment and was in utter disgust at my choice of underwear, as I was wearing a thong. As a teacher, you never want panty lines or anything else visible, especially when you stand in front of teenagers all day long!

Anyway, I have always been very involved in anything my MS Center wanted or needed. I would speak at events for them, including at their very exclusive wine tasting event where I spoke to the “high rollers” and we managed to get eight pledges to purchase new chairs for the infusion suite and we only needed seven. I spoke at the re-dedication of the center when we relocated to a bigger space in the hospital. Oh and also… I didn’t know I was on the agenda to speak that day but did so nonetheless because I believed very strongly that it was the best place for me (and any other MS patient) to be treated.

I’m very comfortable at the podium, speaking to the “high rollers”.

When I stopped working, I was asked (begged really) to volunteer there, as one of their volunteers had recently moved out of the area. I said yes without hesitation. And for two years, I showed up weekly for a four hour shift, where I worked my butt off. I did it to help because I knew they were growing and short-handed. I am a quick learner and soon I was answering phones, scheduling appointments, confirming appointments, and scanning papers into the system. I do believe that this was when I grew more and more disillusioned with the Center while I thought I was giving back to a place that had taken such good care of me through the years. Not only did I feel that I wasn’t getting the same level of care that I had for years earlier, I got complacent. Everything was easy and convenient. In one place I could see my specialist, get my lab work done, get my MRIs, and even get my infusions. And I kept thinking well I’ve had this disease for so long already, my history is there, and what else can they do for me at this point?

After two years of working for free (and only because I was asked), I was fired without any conversation about it. They simply kept telling me “there was no work”, which I knew was a lie, and if they didn’t want me seeing how things ran then they never should have begged me to work there in the first place. And the fact that I didn’t even get the courtesy of an explanation really hit me hard.

Additionally, my appointments no longer felt comprehensive, and I spent on average less than half of the 20 minute time slot I was allotted with the neurologist. On the patient portal I found errors in the dictation, and details I deemed necessary missing from this very important documentation, especially since I am on SSDI and they regularly ask for doctor’s notes in order to maintain my status (and income).  I found certain treatments being pushed on me that I did not want, and had to threaten to leave to get the one that I wanted. This was not the kind of care I had grown accustomed to, and I knew I deserved more.

I had been unhappy for a while, highlighted by the fact that  I kept a short list of all the best and well-known MS specialists in the area, along with their locations and phone numbers in the back of one of my notebooks “just in case”.

So this past December, when I went for my semi-annual treatment I was humiliated by one of the medical professionals who talked to me in a way that no person in that position should talk to a patient… and certainly not to a peer who is a highly educated woman. It was on that very day that I knew my time was coming. This was not the same place I had grown to know and love. I no longer felt safe or well-cared for. I no longer had confidence in the people we as patients depend upon most.

This is on the day of my December infusion, sitting on the floor stretching, and grateful for the mask that hid how I was really feeling.

And scary as it is to make a change after calling this place “home” for all these years, I know it’s time. We all outgrow things, sometimes we outgrow people, and sometimes we need to make changes to ensure the most positive result living our own reality. Staying on top of your team means that you are advocating for yourself (because who else will?) to make sure that you get the treatment and care that you require and deserve.

Just a little bloodwork to cover all the bases! (Sorry to the squeamish readers out there!)

I don’t regret not making a move sooner, because the universe has always guided me when and where to go. If I didn’t get “fired” from volunteering there, I wouldn’t have ended up at Marty’s Place Senior Dog Sanctuary, where I have been happily volunteering for over 4 years, and I’m showered with gratitude every single shift. And I needed to see clearly how drastically things have changed which only only comes with hindsight. Knowing your worth is beyond priceless and I always want the captain of my ship to see my value as well.

It all boils down to the fact that every single patient deserves to be treated as though they are not just a number passing through the doctor’s office. We are wives and husbands, sisters and brothers, aunts and uncles, and moms and dads. Most importantly though, we are human beings. We have feelings. And when we deal with chronic illnesses we count on our medical professionals to help us navigate the uncertain waters in which we swim. If you aren’t given a lifeline by the captain of your ship, then perhaps it’s time to find a new crew.

Three hours together, just to collect data, and an appointment in six weeks to discuss it all. Now THAT’S what I call comprehensive!

If you had asked me even a few months ago if I carried any PTSD with me from my heart transplant surgery, I’d probably have responded with something non-committal, like “sure, don’t we all have some form of PTSD?”  But I’ve been giving it a whole lot of thought lately and the answer is so much more nuanced and complicated than that.  And just so you all know, I’m not a doctor, nor a therapist.  These are all my own thoughts and experiences, with a few experiences from friends thrown in.

All of this reflection started at my dentist’s office a while ago.  The hygienist was cleaning my teeth and calmly asked me if I clenched my jaw/teeth a lot.  Truth is, I hadn’t given that much thought or really even noticed.  As I thought about it though, I realized that was a defense mechanism of mine.  When things got tough, or painful or complications arose, I would clench my jaw and take the next step forward.  For me it was like girding my loins for battle.  The preparation would just require a good clenched jaw.  Soon I was subconsciously doing that in my sleep (and apparently still do).  It makes sense, because some mornings I wake up with a sore jaw and wonder why.  

It got me thinking about what other kinds of post traumatic stress I carry with me and I realize that all of my senses carry some form of trigger for me.  Sight, sound, touch, smell,  and taste all trigger memories for me.  But then, don’t they for most everyone?  As a heart transplant recipient, some of those memories hit me at the oddest times and stop me in my tracks.  So, I thought I would start processing all of that, right here in public.  Oof – this is going to be way out of my comfort zone, but here we go.

Well, let’s start with touch.  I’ve got two of those that come to mind.  The first one is weird – at least it is for me.  And it starts with my right elbow.  I spent so much time in the hospital, that my right elbow was raw from resting against the rough hospital sheets (and probably from IV’s, PICC lines, etc. as well) and to this day, if I put my elbow down, I’m immediately brought back in my mind to a hospital bed and pain.  Claustrophobia is another common form of PTSD for many patients after a long hospitalization.  We’ve been intubated (sometimes multiple times), we’ve been confined to a bed and a room and when we feel confined now, in any way, a little panic sets in and we start to look for the exits.  One of the gifts of Covid for me was that on one of my recent hiking trips, the caves along the way had been closed, because it was impossible to maintain safe distance inside.  My husband was disappointed, but me?  I was quietly thrilled that I didn’t have to face that fear.  Ok, maybe not so quietly thrilled.  We’ve already covered these darn clenched jaws.  I just caught myself right now and had to consciously unclench my jaw.  Why?  I think my kidney function is a bit off right now and as a transplant recipient, that’s a concern.  The medications we take to keep our heart hidden from our immune system sometimes overwhelm our kidneys and the number of people that require a kidney transplant after receiving a new heart more than quadrupled between 1995 and 2008 (most recent study I could google, but it holds true today). Tomorrow I go in for testing and blood work which will tell us what we need to know.  And probably until the results come back, I will be subconsciously clenching my jaw.  I am preparing for battle.  And, truth be told, I’m preparing for battle every day.  A battle for my health, my new heart, to choose a positive outlook every day, for an ounce of normal in the weird Covid and hopefully soon to be post Covid world we live in now.  And maybe, you are too.  So together, let’s inhale….and exhale….and know that we’re good.  It’s ok to feel tense, as long as you recognize it and own it.  Don’t let it control you.  

Let’s move on to sight.  This is probably where I carry the least trauma.  But maybe you’re different.  I just recently had a right and left heart catheterization and realized that the mere sight of the cath lab makes my breath catch.  I had to do some intentional breathing exercises to get me past that.  My experience in the cath lab may be different than yours.  For all my body has been through, it doesn’t play well with most IV type medications and is super sensitive to dosage amounts and dye.  I have yet to go through a cath without a lengthy recovery due to one complication or another.  I have been in a cath lab more times than I can remember, and every time had some sort of complication. I have a friend who can’t see lightning without being taken back to the shock of her ICD (Implanted cardioverter defibrillator), which happened more than once while she was driving during a lightning storm. I have another friend for whom seeing a dish of hard candy takes her back to the trauma of a treatment because there were always dishes of hard candy in that space.  Sometimes even a color can be a trigger.  For some it’s that particular shade of blue you always see in hospital gowns.  Do you have trauma you hold in your vision?  We take in so much of the world through our eyes, it’s where we first take in all that happens to us.  It is how we all begin the  processing of our trauma. How are you processing?  Ok, let’s take another deep breath.  It’s time to move on.

Sound.  This is a big one for me, how about you?  And my sound is beeping.  From the time I had my first ICD surgery, I was told that when the battery wears down it would make an audible beeping noise.  And within two years, when I started to hear a beeping noise coming from my chest, I knew.  But it was too early for my battery to be having issues.  I had to have my ICD replaced three times before transplant.  And if you’ve ever spent much time in the hospital, you know that beeping is a fairly constant sound.  Even today, three years after my transplant and no longer with an ICD,  if I hear an unexplained beeping noise, I have to stop and figure out where it’s coming from.  I’ve even been known to stop conversations to ask “do you know where that sound is coming from’?  Is there a sound for you that takes you right back to a trauma?  How are you processing that?  Time for a deep breath again.  

Smell.  Oh gosh, smell.  That distinct disinfectant smell of the hospital for sure, the smell of a lidocaine patch, the smell of some medications, especially the liquid ones.  All of these and more take me back to trauma.  The weird almost burning smell with some procedures.  I’ve learned (and relearned) that we take in our trauma through all of our senses and that smell memory is held more firmly and more vividly than memories of events, or people.  That’s why smells, tastes, sounds, etc., both good and bad can immediately take us to a place and time.  Whether it’s the smell of your mom’s pie coming out of the oven and the warm feeling that brings with it, or the smell of the liquid antifungal medication that makes you recoil, smells can take you back to a place and time so quickly and without much warning.  How is your processing going?  Is it time to take another deep breath?  If you need to take some time and write down some of the sights, sounds, feelings and smells that bring you back to your trauma, do that.  Take the time.  Recognize your triggers and own them.  Just don’t let them own you.

And finally,  taste.  The salty metallic taste you get when they flush your IV line with saline.  Just writing those words brings me back to a hospital bed and a time of trauma. For me, though, the worst one is applesauce.  After my transplant, I had to relearn how to swallow.  They would feed me blue dyed applesauce and then thread a camera up my nose and down my throat to watch the swallowing process.  It was as uncomfortable as it sounds and I don’t think I could ever eat applesauce again without feeling the camera being threaded up my nose…  A lot of transplant patients have to take liquid antifungal medications for a while after transplant and both the bright tempera paint yellow color and the absolutely horrible taste of the Nystatin is a taste that sticks with you for life.  I have a friend for whom the taste of mint gum brings home trauma because she used it to get rid of the taste of the medication. Even ice chips can bring you back to some of the worst times of your life.  At times, it’s the only thing you’re allowed.   I think that taste is the most personal space where we hold trauma.  When I researched and talked to other patients, the responses were completely different and unique.

So, after we look these bits of trauma in the eye and acknowledge that we all have them and all have an effect on our lives, what do we do with it?  Well, everyone is different, but I will tell you how I’m handling it.  And I’m using the present tense on purpose as this is an ongoing process.  The first step you’ve either done or maybe this article has prompted you to start, which is to acknowledge that there is trauma and face it head on.  Once we recognize it’s there, it loses its power over us.  This may be something you train yourself to do, and something you have to repeat a lot.  Counseling is an amazing choice and helps build a new stronger foundation. One where you still can recognize your trauma, but you have a game plan to deal with it when it pops up in your life.  Creating a game plan is something you can do with your counselor.  So that when you are triggered by something that takes you back, you have a two or three step plan to respond to those triggers and keep moving forward.  For me, my faith is the primary way I deal with the trauma and triggers associated with transplant.  Taking everything to God and asking for His guidance through it all has gotten me through so much and He continues to walk right beside me throughout this adventure.  Creating a quiet space to pray, meditate, or journal, is part of that process.  Don’t let the busyness of life get between you and properly processing the trauma you’ve been through.  Being honest with family and friends is critical for me in dealing with trauma.  It’s vital for me to have a safe space to land where no one will tell me that I shouldn’t feel the way I do, or that I should “suck it up” and just be grateful.  Please don’t get me wrong, every morning I get to wake up, my first emotion is gratitude, but we can hold both the gratitude and the trauma together at the same time. 

No matter the health struggles that you’ve faced, whether it’s transplant or something else, the medical trauma that follows can either limit you or be kind of freeing.  And that, friends, is up to you.  It is your choice to either face it head on and walk through it, or pack it away.  And if you do that, it will always come back and it will take as much control over your life as you allow.  Let’s come up with a game plan to deal with trauma.  I’m not a therapist, but I know your team has a great one.  And that’s a good place to start.  

The room was dark. There were no distinguishable sights or sounds. It felt like the beginning, when the earth was formless, the creation story I’d heard over and over as a child in Sunday school. Somehow I’d fallen into the formless void, the black nothingness. I couldn’t tell you where I was or who was there with me, all I knew was that I was there.

I. Was. There.

The last thing I remember before that moment was waiting to be taken into the OR. I’d already crossed the sterile line, through the double doors into the place where I had to do this alone. There was no one to carry me across the threshold, no one to sit beside me and hold my hand as I crossed over from one life to the next. It was only me, alone. I stared at the ceiling and tried not to cry. I concentrated on the sounds of the nursing shift changeover, with the morning nurses shuffling in with their hands full of coffee and the night nurses with their tired eyes grabbing their bags and heading towards the door. Back out of the land of transition, back into the world of the living. Something about waiting in that OR felt like sacred and holy ground. I kept waiting for someone to walk through the doors that I knew, for someone to come and talk to me to relieve my fears, but every moment I waited pressed into me the fact that I was alone for this part.

From what I know now, I was taken from that waiting room to the operating theatre. I was given a liver transplant, reconstructive surgery, a second liver transplant, all within a 4 day window. The liver ultimately inside my body now didn’t belong to my brother, like we’d all originally planned, but had formerly lived inside the body of a stranger who lived across the country from me. I spent weeks on a ventilator, fighting for my life in the subtlest and most obvious of ways.

And then I remember waking up. For all intents and purposes, I was alone for this part too. I had to carry myself over the threshold. I had to cross over all on my own, from one life to the next. The act of healing is a solitary journey. Doctors and nurses and loved ones cared for me but in the end this work was the kind I needed to do alone. And so I woke up, in this formless nothing, and I don’t remember much except that I felt new life stirring inside me. There’s no good way to describe it except for I felt like I was alive again. Right where my liver rests, I could feel what felt like a glowing, amber light that cradled my body from the inside out.

The 23 years I lived with Glycogen Storage Disease — a rare condition where my liver was missing the enzyme needed to turn glycogen into glucose — everyone always told me it didn’t hurt. My body wasn’t in any physical pain from the missing piece of my liver, that only the effects of this deficiency caused trauma. I believed them, after all they were the professionals and I was only a child. I didn’t know what it felt like to be in a body, didn’t know that this constant level of resonance and vibration wasn’t normal. But when I woke up after that surgery, my body still buzzing from all the pain killers and medications they had given me, I knew right away they had been wrong. There had been pain, I had distinctly felt the lack of that existed inside of me up until this point. And I didn’t feel it anymore. I woke up and without even knowing the outside world existed, I knew I existed. I knew I was alive, and I felt light and nothing hurt anymore.

It was like death, but better. It was rebirth.

The content is produced by CCYAN and their fellow Nathalie Garcia.

I have anxiety. 

I am afraid to speak up, almost all the time.

I press my nails hard into my palms when I think about why I said “How are you?” too quietly. 

I bring this up because about one year ago, I had an allergic reaction to an infusion. I had been on this infusion for several months, almost a year at the time. At first, I stayed quiet about the symptoms I had been feeling for a couple of weeks leading up to it.

I think a part of me genuinely thought it was in my head. When people around you are constantly telling you your illness is your fault or that you look fine or that your symptoms are just your anxiety, you start to believe it. 

It started with red, blotchy spots all over my skin. Some days were worse than others and eventually, I went to see a dermatologist who prescribed me a topical medication and I didn’t think anything of it except for the occasional feeling of shame when the spots became more visible. 

At the infusion before my reaction, I remember just thirty minutes into it, I felt so sick. I could hear my heartbeat in my ears and everything felt slow. I remember trying to explain that I wasn’t feeling well and then downplayed it for just being tired because I’m used to doing that.

At my next appointment, the same thing happened. I started to cough and my lungs and throat felt itchy. I felt little ants all over me, starting at my feet all the way up to my chest. I stayed quiet still because I thought I was just making it up in my head until my nurse pointed out that I looked a little flushed. 

When I got up to go to the bathroom to check it out, with the IV machine trailing behind me, I stared at the mirror in absolute shock when I saw welts the size of quarters flooding my skin and hives spreading quickly across my chest and neck. My mother who was with me became panicked and called the nurse who immediately notified the doctor. 

I remember I started laughing hysterically because I was so afraid. The nurse quickly started Benadryl through my IV and I was just shaking because I felt so cold. The doctor was asking clarifying questions but they just sounded like echoes in my head. Eventually, the reaction subsided and I just layed there, stiff, with anxiety. 

What I didn’t know was that ever since that day, anytime I go to an infusion or take one of my medications I am so afraid of it happening again. I got lucky that my nurse noticed something was wrong before it was too late, but I can’t help but wonder if I had just spoken up earlier I could have avoided all of this in the first place.

But I want to stress that it is not your fault for not speaking up. Sometimes it can feel like anxiety is taking control over your life but every day you struggle with anxiety and still choose life, you are the one taking control of your life. 

I don’t feel guilty anymore for not speaking up then but now I understand that I deserve to speak up for myself now. I deserve to be heard. When it comes to your health, it is never just in your head. What I mean by that is whatever symptom you are feeling– whether it be a physical manifestation of anxiety, racing thoughts, pain, discomfort– those are all valid and not imaginative. 

The next time you feel too anxious to speak up, just remember that you deserve to be heard. 

Originally posted on MyMigraineLife

I wanted to write about this experience for so long. But honestly, I’ve had trouble getting my thoughts around our round table discussion and how much changed. In reality, I feel bonded with these people in a way I could have never expected. To this day (almost a full year later) I still have not been to another in-person migraine event. I haven’t hugged any patients like me and we all need a hug!

We tried to solve the challenging problems which come with chronic diseases.  It felt like sitting in a room with strangers and by the end we were hugging and I missed these people as I flew home. By connecting with patients like me and caregivers, we were different yet the same and above all, wanting to do something about migraine. 2 weeks later my school shut down and life as we all knew it screeched to a halt.

To read the full piece, visit Sarah’s blog here!

The clock struck 2 AM, my face illuminated by the blue light cell phone glow. Visiting hours had been over for a while, the nurses gently paced the hallways, and the sound of my roommate’s snoring filled the room. The entire transplant ward had fallen into hushed silence, but I couldn’t join in its rest.

 Here I was, a month post liver transplant, in an entirely new world I didn’t know how to navigate. When they sent me out of the OR with sutures and lines, they didn’t include a guidebook for how to live life with somebody else’s organ taking up residence in my body. When the transplant coordinator sat beside me with a list of medications I needed to take for the rest of my life, in order to not reject my new organ, she didn’t give me a contact list for people to reach out to when I needed somebody to understand the frustration of not being able to apply eyeliner because of tacrolimus tremors, or when having a scar that extends across the entire length of your abdomen offers a blow to your self-esteem.

 And so, I did what any savvy millennial would do, and I took to social media. I googled different combinations of the word ‘liver transplant’, ‘organ donation’ and ‘under 35’. I scrolled through Instagram hashtags and Facebook groups, just hoping to find one person who shared a similar story. I wanted to find one person I could relate to, one person who was living life the way I was, one person who understood and was honestly sharing their story so it could shine light on the road that lay ahead of me.

 Slowly, I began to find them. Few and far between, posts buried deep on the internet. I filled their inboxes with messages, asking about everything from meds to relationships, and they kindly responded with so much grace, welcoming me into their fold. But I soon realized it wasn’t enough. It shouldn’t be this hard to find resources, connection and support.

 A transplant friend I met in those dark Instagram scrolling days messaged me one day about a new platform she was working on, asking if I wanted to get involved. It was called TransplantLyfe, she said, and it was a place to connect. No longer would we be destined to browse the internet in solitude hoping to find another beacon to match ours, but there would be a platform where we could all find one another without the added hassle of sending out our signals and just hoping someone found us when they needed support.

 I jumped at the opportunity. And from the first time I logged in to TransplantLyfe, I knew it was what I had been searching for. Out of the woodwork came so many patients, people who shared my story and understood the ins and outs of the transplant world. Each at different stages of our journey, we shared insight and inspiration for what lay ahead. The forums served as a great location to ask my questions, and get answers, to find support. I could chart my medical information I needed to keep and send to my doctor, which was so convenient considering I’m a little spacey these days and tend to lose everything I write down.

 The more time I’ve spent on TransplantLyfe, the more I understand what a lifeline it is. I see how, if I was given this resource in the days after my surgery, it could have spared me from feeling so alone and isolated. I am grateful for the gift we have in one another, and the way it has ignited a spark in me to take initiative in not only my own medical care, but in raising awareness for organ donation and in acting as a support for other transplant patients.

Whenever we create breakfast dishes, we tend to lean toward certain breakfast “staples” like sunny side eggs and French toast. However, in the midst of a pandemic, it’s only natural that you would want healthier meals–preferably those that can boost your immunity against viruses and chronic diseases, too.

Fortunately, there’s a variety of healthy breakfast dishes for you to try out, and most of their ingredients can be found in your local supermarket. Here are five creative breakfast recipes to inspire your next morning meal.

Breakfast burrito

Burritos can be eaten at any time of the day, depending on what you stuff inside. For breakfast, we highly recommend this turmeric and tofu recipe by two-time cancer survivor Ann Gaffney. It has three main ingredients: tofu, avocado, and turmeric. All three ingredients have impressive anti-inflammatory properties that can decrease the risk of chronic diseases.

Tumeric, in particular, can increase the immunomodulating capacity of the body, so it’s great for thwarting viruses. You can make these burritos in batches during the weekend, so you won’t have to do the prep work in the morning.

Breakfast rice bowl

Rice is packed with protein and carbohydrates to help your body stay energized during the day. Plus, cooking rice is a great way to ensure that you have a versatile ingredient that you can work into different bowls. Some rice cookers will even cook the basic ingredients for you, like eggs and vegetables, at the push of a button. Depending on your preference, your breakfast bowl could contain classic morning ingredients like ham or more unique toppings like fruit. Just make sure to select rice that’s whole grain, like barley and buckwheat, since they contain phytochemicals that can protect your cells from damage.

Overnight oats

Much like whole grain rice, oatmeal also has the same phytochemical properties that shield your body from chronic diseases and boost your cell’s immunity. Overnight oats are the perfect breakfast recipe for those looking to eat something healthy and colorful but don’t have the morning energy to prepare it. The night before, soak your raw oats in milk. This will allow the oats to absorb the liquid, softening them enough to eat without tossing them on the stove. The fun part about this recipe is the variety of toppings that you can mix in. You could put in some of your favorite berries, sprinkle in some homemade granola, or even add seeds for that extra crunch.

Tea pancakes

Pancakes are another versatile dish that can go with any ingredient, as long as you make it from scratch. One thing you should try is adding tea into the mix. There are many types of tea in the market, from earl gray to oolong, that you can choose from. But tea, no matter what flavor it takes, is naturally rich in antioxidants.

Antioxidants are known to prevent “oxidative stress,” which is one of the main causes of cardiovascular disease and cancer. Many types of tea are anti-viral as well, such as licorice root, peppermint, and black. To add the tea into your pancake mix, soak the tea bags in a saucepan while you heat the milk.

White fish omelet

Omega-3 fatty acids are a type of unsaturated fat that reduces inflammation in your body, making it the perfect ingredient to block heart disease and reduce the chances of stroke. They also boost the function of white blood cells, protecting you from any viruses.

Among all seafood, white fishes like cod, bass, and catfish, are some of the foods that are most rich in omega-3. While white fish is normally consumed during lunch or dinner, there’s a way to sneak it into your breakfast, too—by mixing it into your omelet. Just remember to simmer it gently, so it doesn’t break.

Healthy meals don’t have to be boring. In fact, with the right ingredients and an adaptable recipe, you could come up with a lot of creative breakfast dishes that you can eat for weeks. Take your favorite ingredient and see how you can turn it into something unique.

Article written by Alessa Rogers

My name is Michael Hehenberger and I donated a kidney to my daughter Karin in March, 2009. I was borderline “old” because I was 63 years old and they usually have an age limit of 60, but I was accepted after going through a lot of tests. They don’t want to do an expensive procedure with two operations going on in parallel where the end result is not acceptable, as they don’t want to waste those resources. They generally feel a 63-year-old kidney may not be as good as a younger one, but so far so good.

I decided to be a donor when my daughter told me that her kidneys were close to not working anymore. She had diabetes and her kidneys suffered, as well as her eyes, and she was approaching kidney failure. When I heard that, she didn’t have to ask me the question. I told her that I would donate a kidney to her.

My biggest fear before donating was that they would take the kidney and put it into my daughter’s body, and then it wouldn’t work. I was never nervous about the actual surgery or the recovery afterwards.

I was first tested for genetic compatibility, and I passed that test. As a father, it’s not automatic that you can be a donor; the best donors are siblings because brothers and sisters are more similar genetically. Once I passed the genetic test, I then had to go through all kinds of fitness tests to make sure both that my kidney was healthy enough for my daughter and that I was healthy enough to go through the operation.

I was very well informed before being a donor and was provided with all of the information I needed.  I developed a very good relationship with my surgeon; he’s a great person. I was running and working out to prepare for the operation, so I was in really good shape. There are lots of statistics that donors live as long as non-donors, but I think it’s difficult to compare because the donor population is, on average, healthier than the rest. In order to be a donor, you need to be on the upper end of the spectrum when it comes to health and fitness.

For me, the recovery process was extremely quick. I didn’t take any strong pain medicine, just some Tylenol. It was really easy, and I got back to normal very quickly. I started running again after two weeks. I had three post-op appointments with my surgeon to make sure everything healed properly. I’m also getting regular blood tests every year and they are measuring my renal parameters, so I’m getting very good care.

I have not experienced any difference in my life after donating; I can eat and drink and do everything the same as before. I had the operation in March, and in May I did quite a strenuous hike at the foothills of the Himalayan mountains. I had planned it with friends prior to deciding to be a donor, and I really didn’t want to miss it. I was able to come back and after less than two months, I was able to participate and do the five-day hike.

Being a donor has motivated me to stay healthy and take care of my remaining kidney. When you do something like donating, you feel good about yourself and you are motivated to come back quickly. I am in a good mood most of the time, and working out is the best way to stay in a good mood.

Looking back, I would absolutely do it again. As I mentioned earlier, my daughter didn’t need to ask me, I told her I would do it. I knew it was necessary, and in that situation, I was the best option. I thought that if I do it now, if or when she needs another kidney, she has two sisters who can potentially donate.

I would tell someone considering being a living kidney donor to not be afraid of living with one kidney; many people live with one kidney and it works; it’s actually quite common. You go through a lot of different, comprehensive, extensive tests and they have a meeting with many doctors to determine if you can safely be a donor. It’s not just one person making the decision. I’m still alive after 10 years, and still feel really good about my decision to donate.